Children's perspective of quality of life in epilepsy

OBJECTIVE: To study child mental health, parental support, and social support of children with epilepsy as these relate to quality of life (QOL) using child self-report, seizure-related variables, and estimated verbal intelligence based on receptive vocabulary. METHODS: A cross-sectional structural equation model of baseline data from the QUALITÉ cohort study, which includes 6 Canadian child epilepsy ambulatory programs. A sample of 3,481 children were screened for the following eligibility: 8 to 14 years of age, with active or medication-managed epilepsy. Of 894 eligible children, 506 agreed to participate, of whom 26 were then excluded because of an inability to self-report based on a standard cutoff score of receptive vocabulary lower than 70. The primary outcome of child-reported QOL was measured using the Child Epilepsy QOL Questionnaire. RESULTS: From the child's perspective, epilepsy-specific QOL is strongly related to their mental health and social support but not to their seizures. Specifically, child mental health and peer support exhibit direct associations with QOL; parental support has both direct and indirect associations with QOL (via child mental health); estimated verbal intelligence exerts its strongest association with QOL through mental health; and seizure status exhibits a weak relationship to QOL only through mental health. CONCLUSIONS: Among children with epilepsy aged 8 to 14 years, mental health and social support should be areas of focus in the assessment of QOL. Controlling seizures is insufficient care for influencing the child's perception of their life.